Yesterday, on 10th September 2026, we were delighted to give evidence to the Health Committee at Stormont as part of a Committee Clinic session attended by MLAs, government representatives and officials. We also had the opportunity to meet with officials from the Department of Health, in response to a letter we sent, welcoming new Health Minister, Robbie Butler MLA, to his position.
This was the first time Endometriosis UK has been invited to give evidence in Northern Ireland. It felt like a step change in how we work in Northern Ireland, providing an important opportunity to ensure the experiences of those affected by endometriosis are heard by decision-makers. Alongside our incredible Belfast Support Group Leader Michaela and CEO Emma Cox, we had the opportunity to share the challenges affecting those living with endometriosis in Northern Ireland and the opportunities for change.
Ahead of the meeting, I heard from a number of women who shared an all-too-familiar experience: not being able to access the care they needed when they needed it. I attended Stormont in 2025, where one woman told me she had already been waiting five years for treatment. When we returned in 2026, she was still waiting.
We shared how lengthy waiting times can have a devastating impact on every aspect of someone’s life. Thank you to everyone who shared their experiences with us ahead of the meeting. Their stories highlighted exactly why change is needed. We also met with clinicians from across primary and secondary care, who shared the same frustrations and the same hope for change.
We are incredibly grateful to everyone who shared their experiences with us. These stories are what drive political action and help make the case for change. A special thank you goes to our amazing volunteer, Michaela. Sharing your lived experience in a room full of politicians is not easy, but it is one of the most powerful ways to help influence decision-makers and improve care for those affected by endometriosis. We couldn't do what we do without incredible volunteers like Michaela.
At the meeting, we had the opportunity to highlight the changes needed to end the revolving door of care in Northern Ireland. While the proof will be in the implementation of plans, it felt as though there was genuine hope on the horizon and that action was finally starting to take place.
What did we call for?
The conversation often centres around diagnosis, and while we agree that diagnosis times must urgently come down, we know that this is not where the story ends. Challenges still arise all too frequently in accessing management and treatment, and specialist and disciplinary services. We stressed the need to reduce diagnosis times, while also ensuring that the conversation doesn’t end there - endometriosis is a chronic, long term condition and should be treated as such.
Our recommendations:
To put it simply, we are calling for urgent reform in Northern Ireland: reduced diagnosis times, improved access to care through improved and mandatory education, a reduction in waiting times, delivery and implementation of regional pathways, and improved education for young people. Northern Ireland is also the only nation without a dedicated women’s health strategy or action plan. We requested that this is implemented without further delay, fully funded and with the right resource and capacity to meet the demand of endometriosis patients.
What’s next?
Following on from our meeting, the Health Committee will discuss these recommendations at its next meeting. We look forward to working with the Committee to hopefully work towards some positive change.
We look forward to sharing more information on how you can take action by calling on your MLA to make a endometriosis a priority soon.